How to help someone who refuses meds/health advice

[Barbara236]

Hi,

My dad's been diagnosed with MND last summer. Currently, he is not able to use his hands and legs and his speech is so bad it is extremely difficult to understand him.

We have found different ways to help him move around and communicate, however, my questions is regarding something else.

He has always been against any kind of medicine/painkillers/doctors and advice - so we spend every evening trying to make him take his medicine (especially muscle relaxing one as he says it makes him sleepy) and convincing to go to bed at reasonable time. How can we ask him to cooperate?

I understand he was used to move around, go to bed late, he was very active (I cannot even imagine what he's experiencing), however, at the moment, whole family is up until he decides he can take his meds (my sister just had a little baby) and go to bed (arguing with us and shouting). We explain, every day, that this supposed to help him ( my mum had cancer 2x and had to take meds that caused many side effects but, in long-term, helped) but he keeps messaging me that telling him what to do doesn't help him. He has a daytime carer and we are looking for a night-time one (he is nicer to strangers), however, having someone over makes him think we don't love him anymore and want to get rid of him (which is not true! we just need a professional help).

The same thing is when I tell him he has to sit straight when he's eating and a little bit afterwards, but he keeps saying his bum hurts (which I believe!) so he has to sit in his sofa with his legs up - even thought he keeps choking.

I am trying to find a compromise so everyone is less stressed and nicer to each other and I cannot even imagine how he's feeling but we are never doing anything to harm him, just advising him on what could help (and we keep telling him this).

Do you know anyone like this or are you a person like this? What approach should we take?

PS: We made one achievement when he got out of the house after 6 months (he refused to do so for so long) - but It was him who made this decision - I am afraid he won't change his mind about meds before it's too late

Thank you very much!

Barbara

[Ellie]

Oh Barbara, I am so sorry you're going through all this - it must be very stressful for you all

I guess your dad has lost control of so many area of his daily life and he is exerting control now in any situation he can, i.e. his bedtime??

He is stubborn and running rings around the rest of the family, almost like a toddler testing the boundaries (please don't be offended by this analogy!) but, for the sake of future harmony, given that he needs help being put to bed, a comprise bedtime which suits whoever is putting him to bed and your dad has to be found. I don't get a choice of bedtime, I go when my husband goes (he puts me to bed) it's how it has to be.

Does he have to take his meds in the evening or can they be held off until bedtime? (I'm a mum to 2 teenagers and believe in the 'pick your battles' approach...)

You are not alone in saying that your dad "is nicer to strangers" - it's a fairly common phenomenon unfortunately that people hurt those they love most I hope you can get night carers.

On your dad's sore bottom: his OT will provide him with a comfortable cushion, so he can sit upright after eating - food going down the wrong way is not ideal... I'm guessing your dad isn't open to getting a feeding tube, given his aversion to many things medical?

Sending you a big hug.

Love Ellie.

[Lynne K]

Barbara, I'm sorry that you all are having such a bad time of it with your dad. I agree with all that Ellie said, especially about a cushion being provided by your dad's OT. There's gel cushions that might do the trick. Good luck getting whatever help and support will make your lives easier and your dad will become more cooperative. I send you hugs, Lynne x

[Barbara236]

Thank you Ellie & Lynne! I really appreciate your replies and tips.
My dad has a few cushions which he needs to alternate as he cannot stay on one for too long. I am looking for new ones as they are more comfortable and soft than used ones.
Even-though we want to spend as much time as possible with my dad ( I live in the UK but fly home every month where I spend 10 days every month) having a night carer would solve the meds issue as he will not say no to a stranger.
It might sound weird but part of me is glad that my dad is so stubborn, it reminds me of when we used to fight and I'm glad he keeps trying and it is still him...
Thank you again and good luck to you ladies xx

[Barbara236]

On the meds question, the sooner he takes them the better (best after dinner). If he agrees to take them an hour before bedtime (which is a hard work), we wash him and put to bed and he slowly falls asleep. Then my mum is able to have a moment for herself, usually falling asleep in front of TV
However, if he takes them in med or just before, he starts coughing and choking and it is difficult for him to calm down and sleep. However, he's been used to fall asleep watching TV (football esp.) and, since his meds make him sleepy, this is one of the reasons he wants to take them as late as possible.
It is a battle we have every night, not pleasant but I am happy he still has an energy and will to fight....